In remission-ish - Do we go with one IVIG per Dr K?

[bigmighty]

DS had his most significant flare from Dec 2010-April 2012 at ages 12-13.  He had IVIG 2x in 2011 as part of 2nd NIH clinical trial.  He seemed to have recovered very briefly after 2nd IVIG,  but got strep 3 wks later and we lost him again for another year.  Remission from that most significant exacerbation came about two months after a three-week steroid taper while on Augmentin 875 per Dr. B.  He had his tonsils removed during senior year in HS per Dr. K phone consult - said we could not send him to college without removing them first.  ENT found 33 different infections on tonsils during biopsy, and even though DS was on antibiotics, he got mycoplasmic pneumonia after having the tonsils removed and it lasted for seven months - was ill well into beginning of 1st year college - and it caused him neuro-psych symptoms.  Months of Bactrim with steroid taper finally kicked infection and OCD.

DS is nearly 21 now a 3rd year engineering student on Bactrim during the school year.  He has had a few minor flares since beating the myco-p, but other than extreme textural and food sensitivities and difficulty staying on the weight chart, he basically manages to keep everything pretty much under control.

Dr. K says DS must have one IVIG within the next two years and that this is his only chance to possible be fully cured (80% chance of complete recovery).  If DS waits, he will lose his window of opportunity and the treatment likely won't be effective.  So WWYD?  Keep bandaiding with various supplements and use antibiotics and steroids as needed for life during every flare (and pray that his internist who prescribes these things never retires)?  Or spend however much it costs for the IVIG (we would do it in one year - right after he graduates from college and starts his first real job), and hope it works?  

We have heard that IVIG sometimes brings on a flare of symptoms that can be very difficult to eradicate.  Plus, DS is Jeckll & Hyde during IVIG - think Linda Blair in the Exorcist one minute and Steve Martin's wild and crazy guy the next.  When he had IVIG at age 12 he tried to destroy the hospital room and spit at and cussed out the nurse (so out of character for him).  We are afraid they would need to straight-jacket him for their own safety now that he is stronger and might do real damage.

DS is at about 85% functionality right now and manages his own medications and symptoms well.  Do we risk losing a solid B in an attempt to make it an A for life?  

 

[jan251]

If you haven't done recent bloodwork, I'd do that first (a full immune system workup and infections).  I would get another opinion if possible.  I don't have advice, except that there's a lot more discussion activity in the FB groups, including one for ivig.  I haven't seen a poll, though the Dr K one-and-done approach seems not necessarily as common as multiple infusions or even monthly (often high dose) these days; lots of different possible approaches.  The two-year window, it's hard to guess what he bases that on.

If you are planning a single high dose infusion, this summer sounds like a good time.

If you saw a lot of side effects during/immediately after IVIg, with some pre-planning those may be easier to manage than your prior experience.

Edited May 5, 2019 by jan251

[tj21]

What's the theory w/the 'window of opportunity' ?

I don't have an answer about what we'd do, but was just recently was asking our practitioner if 'maybe we're at the best we can be' (no full remission) and how much more to push and keep trying. DS19 can't manage things by himself, complicating things. But we have 2 more HD IVIgs scheduled until we start the insurance auth. and appeals all over again.

[ejh]

That sounds like a difficult decision. What does your son think? He is the one who will deal with the results of either option. If any ill effects of the IVIG could be stopped by steroids if need be doing the IVIG at the beginning of the summer does sound like a good timeframe. 

[bigmighty]

DS wants to to it.  DH is on board to spend our savings to make it happen.  I am the only one with reservations.  DS will see his internist this May to get 2nd opinion (she knows Swedo and is very up-to-date on latest studies/articles).  If internist agrees, we will have a call w/ Dr. K in Jan, then labs and another call w/Dr. K in March.  Hypothetically, then IVIG in May 2020.   Thanks.

[jan251]

With your brief description of his prior IVIg -- reacting right there in the hospital -- I would be careful with infusion rate and possibly pre-medicate (many people do ibuprofen and antihistamines).

If you are paying out of pocket, price out your options ahead of time.  Hospital infusions tend to be the most expensive, sometimes double or often triple the price of other options.  As you are aware, home infusions tend to be the least, though if you feel more comfortable in a clinical setting (understandable with his prior infusion), there are infusion clinics all over the place these days, your basic clinic with rooms, nursing desk just like at the hospital, a doc in the building, etc.  They just need a doctor's order.  Our infusion clinic has an out of pocket price list.  Yesterday I paid $83 per gram for 100g Gamunex C and about $500 nursing fees for two days of infusion (though my kid is pretty fast after so many monthly infusions, only about 3 hrs infusion time for 50 g/day x2) $8800 total for 115 lb kid.  It is possible to call infusion clinics to ask about their out of pocket prices.

Edited May 5, 2019 by jan251

[bigmighty]

Thanks.  I don't think we will have options with respect to where to get IVIG. I believe Dr. K still uses only one specific facility in the Chicago area.